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Topic Exercise and the Davis Phinney Foundation Go to previous topic Go to next topic Go to higher level

By dkleinert On 2010.12.17 00:50
Don't know if many of you remember, but after my PD husband had his knee replaced last Dec, his PT began a rigorous exercise program. At that time we were approaching the beginning of 2010, and had more Medicare benefits for PT available. Sandy is the BEST PT person possible. She has had both of her knees replaced, runs marathons, and can inspire my PD hubby to do just about anything. She put him on a tough program. He was going for appts 3 times a week, and working out with her for 1 hr a day. They did treadmill, stair stepper, bicycle, weights, balance exercise, etc. She insisted that he go to the chiropractor prior to his visits with her. After about a month of this, we were all astonished at the change in Joe. He was standing straighter, smiling more, his urinary urgency was lessened noticeably, he seemed more involved in our life, and the best of all for him, was that he was sleeping for 5-6 hours at a stretch at night without waking up! That had not happened in many years. So after his Medicare benefits ran out in mid year, we wrote Sandy's regime down on a schedule, and because we do have all of that equipment at home, Joe began to keep doing the same routine 3 times a week. The results were amazing. He felt better than he had in 2 or 3 years. I could not believe the difference and how the exercise reversed his PD symptoms. Of course the symptoms were not gone, but greatly diminished. His tremor was not constant in both hands any more, he was not bent over at at 60 degree angle, he was no longer shuffling - taking short steps, but not shuffling, and so we were delighted with the results. Then he fell off of the front porch because he had stopped using his cane....... our German Shepard was too much for him with his PD balance issues, and when Summit took off running and Joe was behind holding the leash - well....you can guess how he broke the arm/shoulder - we are 3 weeks into that now.

I said all of that because during these last 3 weeks while he has not been able to exercise at all, has to sit all day and night in the recliner (doctors orders), his PD symptoms have come back.....he only sleeps for an hour at a time during the night, his urinary urgency is much worse again, he is hunched over, weaker, quieter, so many things are back to pre-knee surgery levels. A testimony to what execise can do. He will begin seeing our PT Sandy again in 2 weeks per doctors orders, and we are looking forward to his return to where he was before the fall.

Yesterday we received in the mail a large box. In the box was a huge notebook and 2 DVD's from the Davis Phinney Foundation for Parkinson's. We do not know where this came from but will find out because it is not free, but oh my gosh......buying the notebook and the DVD's that come with it are so worth it for anyone who has or is caring for someone who had PD. Davis Phinney was a celebrated cyclist, and then he was diagnosed with PD. He believes in exercise and what it can do to help push back on this disease process. He is an example of it. On the DVD's that came with the notebook, are the lectures that were given at his recent "Victory Summit" seminar he held. More than one of the lecturers said the same about the positive affects of exercise - strenuous exercise. So if you have any interest in this, go to: www.davisphinneyfoundation.org. This foundation works to fund local exercise and speech programs for those with PD, and keeps everyone abreast of the latest in research for PD. We were so encouraged after watching both of those DVD's, and I thought of all of you as I watched. Davis Phinney is a very inspirational man. He believes that we have to look at the smallest of triumphs and count them as victories. Each day we can have so many victories each day and that we need to celebrate them - no matter how small they are. Love and hugs to you all.

By parkinit On 2010.12.17 10:29
I am not one to downplay exercise as I am an avid believer in it myself, but there is a time when you have to weigh the pros and cons and look at the "full picture."

My spouse went to the gym and did weights religiously about 5 years ago. He has been diagnosed for around 10 years. After two torn rotator cuffs about 2 years ago, he then jumped on the stationary bicycle and occasionally worked in the yard to continue his exercise regime.

At this point, we note when he does exercise (usually 5-10 minutes of yard work), it greatly diminishes his ability to function the rest of the day. It is as though the exercise more quickly uses the carba/leva in his system (actually, we have noted this for the past several years), so he is left immobile until his next dosage.

Currently, we look at events for the day and any more when we have more than 2 events to attend, we select only one for best results on his day. If he tries to do more, he has great difficulty - I believe not only because he becomes immobile, but because he gets stressed and this impacts his well being as well.

What I'm trying to say without appearing to spout out a diatribe is that we need to be highly attuned to what our PDers are physically capable of doing and maintaining a good quality of life. As long as mine has "projects," he seems to not suffer depression or miss the physical activity of years past.

In conclusion, I am amazed, truly amazed at my PDers resilience, fortitude, and continued good attitude about his "unfortunate situation." I'm not sure I would so aptly hande this ugly, monstrous disease. I guess that's why I'm The Caregiver.

Blessings to all...

Certainly, push the exercise when they are able and it doesn't adversely impact their overall well being, but when it reaches a point of being destructive to their daily well being, it probably is time to back off.

By dkleinert On 2010.12.17 12:03
Parkinit - THANK YOU for your comments. It made me realize that I should have softened my enthusiasm with a warning that exercise may not be right for everyone. The exercise my PD husband was doing was monitored and prescribed by his PT because she knew his limits and abilities. I surely don't recommend or endorse anyone with PD taking on an exercise program without professional guidance - that way, the PT will be knowledgeable about PD, and know what things to limit and what exercises to encourage. Our PT has not pushed my husband to do things he was not capable of - she saw potential and worked toward that because she has had other great successes with her PD patients, and felt my husband could be one of them also.

I am sorry to everyone if I made it sound like exercise is the panacea for PD - it is only one way that some of those with PD can possibly find a way to ease some of the symptoms and feel more in control of this awful disease. Please forgive me - I get excited about anything, no matter how small, that gives my PD husband hope and puts a smile back on his face.

By parkinit On 2010.12.18 08:57
DK -

You certainly don't need to apologize for your enthusiasm. Your husband is blessed to have you "on his team."

As indicated in my note, there may come a point where the exercise no longer is effective. Then, your spouse may need to find other things ("projects" in my spouse's case) to continue to stimulate his mind and energies. It's just another transition or phase in the disease that we, as Caregivers, must deal with and recognize.

Again, your spouse is blessed in your support and that you recognize how highly beneficial exercise is to him. That's what we do, isn't it? We read, absorb, learn, and try to do what is best for our spouses - no matter what phase of the PD disease they are in.

By shakingpt On 2010.12.23 09:46
Being a physical therapist myself I strongly encourage an exercise regime to slow down the onset of PD. The majority of PD'ers DO improve as a result. I encourage you strongly to continue with the exercises.

By Michele On 2010.12.24 04:49
Shakingpt, what do you think about pt in later stages of PD? My husband is in a wheelchair because of freezing in his legs. His legs are strong as is his upper body He has mild dementia He has done both outpatient PT and home PT in the past.

By shakingpt On 2010.12.24 06:21
I believe that exercise helps at any stage as long as your PDer can follow any direction. Usually one of the biggest problems for advanced stage Pders is transfers. Sit to stand can be a big chore as well as stand to sit. My best advice on these transfers is getting your PDer to bend at the waist. The further the bend the better the transfer. Hold the shoulders and encourage a bend at the waist. You may need some gentle encouragement to get him to do so. Good Luck!!


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